The Chronic Diaries: Life Filtered Through Leukemia

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10/13/16 Organizing Thoughts

I seldom try to organize my thoughts when I start writing. Perhaps you’ve noticed. No doubt, you’ve noticed. I just start and let ‘er fly from there.

“We probably need to start you back on regular treatment (formerly chemotherapy and immunotherapy, now just immunotherapy),” said Dr. Gooday at the Big-as-Texas Cancer Center (BATCC) on Monday. “We’ll get you back in November for a bone marrow aspiration and a genetic workup. In the meantime we will increase your dosage of the ruxolitinib to 15mg twice a day,” he added.

I didn’t like the sound of that, which was precipitated by a diminishing response to the ruxolitinib, which had heretofore been remarkable, I thought. As of late, many old symptoms had returned, and though not as bad as before, were definitely increasing in intensity and persistence.

I pressed him a bit. No response. I pressed him a bit harder. He was holding his cards pretty close to his chest, not allowing me a sneak peak, but his tone suggested that he was not pleased and had suspicions about CLL progression, and more than his tone, his decision to do the bone marrow aspiration and genetic workup and suggestion of further treatment sort of, well, more than sort of, confirmed that he didn’t like what he was suspecting. They are suspicions, though, and not statistics, yet, though for the experienced, previous statistics are fairly reliable prognosticators.

As I pressed, he frowned at me.

“You are a veteran, now, of CLL. You know there is no need to worry about anything until we have the facts. We will get to the facts, and you can leave me to do my job, which I am very good at,” he said, knowing that I know more about my disease than most laymen, which means I know enough to be dangerous to myself and others.

“My goal is to get you back to a MRD (Minimum Residual Disease) negative status. We’ll see if we can make that happen. I want to eliminate this disease before I retire,” he said. And retirement can’t be that far off, since I overheard some other patients in the waiting room discussing their attempts to see Dr. Gooday, who were directed towards other hematologists because Gooday was not accepting new patients.

A lot of things have changed in the eight years I have had CLL. In eight years, new hematologists/oncologists, like Hemosapien, were just turned out of their residencies and have now become seasoned veterans, and seasoned veterans have retired, or expired. And all have had veteran patients expire even as new patients came into the fold. It is life in a microcosm, though an accelerated one for some. In the eight years I have had CLL, one of its foremost experts, Dr. Terry Hamblin, from Britain, passed away from his own CLL. Being a CLL expert is no guarantee one will not get CLL, though I think that Dr. Hamblin’s case and his contributions to CLL research and his passing are worthy of remark.

“Let me worry,” said Gooday.

So I am not worrying. I am not worrying about a genetic change to something more sinister. I am not worrying about a secondary cancer. I am not worrying about the discovery of some nefarious developing trend with this clinical trial medication I am taking that has dire consequences. I am not worrying about my CLL progressing. I am not worried about the prospect of taking more chemo. I am not worried about having to have another bone marrow aspiration. I am not worried about the returning symptoms after the initial success of the ruxolitinib.

Hmmmm! My ability to quickly and completely rattle off all the things I am not worried about may have you a bit disbelieving in my bravado. You might think it is false.

“Look at the courage and strength of Chris,” I can hear you saying, knowing that you know that I know that this is what I want you to say. Truth is: this is true and not true all at the same time, which is only something we can get away with in the folly of the humanities, and human thoughts and emotions certainly fall withing the envelope of humanities. I know better than to think dire thoughts, and when they cross my mind, I do not dwell on them, though to say they don’t try to set up housekeeping would be misleading. They can move right in and set up shop, forcing you to pay the rent on the expanding space they occupy, never yielding an inch if one lets them. Pretty soon, they’ll be one’s only thoughts.

A dire thought crosses my mind. I think about it. I think about it more. I begin to dwell on it as I am in the midst of doing something productive, or something that I like. I think about the thing I like that I am doing. I reject the dire thought in favor of the task at hand. The task will soon be over. There will be another. The dire thought will soon pass. There will be another.

Some people live their whole lives with fears, rational and irrational. Even the irrational fears are real fears to those that have them; the root of the fear may not be real, but the fear is. I have the occasional morbid thought, which occupies my mind for a while then moves on, I suppose, because I am easily distracted, unless I am reading, or playing music, or working on a project, or working in general, or reloading ammunition, or sleeping or trying to sleep, or engaged in lively conversation, which, after reviewing that list, means there is not much room for the morbid thought to gain a viable foothold to climb, though it is clinging to the base like algae in your fish tank: tenacious, visible and present even if invisible, and only partially removable, there being always some remnant there to reestablish its climb up the glass sides to obscure your vision of the fish inside and their view of the world outside their tank. (What a long sentence! I had to rest after that one.)

If a sentence is to contain a single thought, then my thoughts are complex, though they may be needlessly so. And I am not bragging about having complex thoughts. We all have complex thoughts. I am just one of the many who are putting them down in words for others to read to try and make sense of. You can give it a try.

“Well, your sentences are needlessly long and confusing,” might say Miss Peggy, a beloved English teacher.

“Your writing would be better if your would organize your thoughts before you start to write,” might say Ms. Cunningham, another beloved English teacher, long lost to me.

“Your writing certainly is creative,” might say Ms. JoAnn, another beloved English teacher, “Even if I find it a bit confusing to read. And you shift tenses on the fly. You should work on that.”

“You need a good editor,” might say Charlene, a good editor. Well, she more than MIGHT say this, she has said it, and done it for me at times. I do love her so.

“You’ll never write a novel,” might say Steve, Ace, Rick, or might have said the late Larry, all novelists of some renown and all friends or acquaintances. “You have an egregiously attenuated attention span.”

“Write about what you know,” whispers Sam in one ear.

“You may not know as much about CLL as Gooday, but you know how you feel about it more than anyone else alive. I expect you are, undoubtedly, the world’s foremost expert on your own opinion about having CLL,” whispers GK in the other.

“You should use shorter sentences,” says Sam.

“His sentences are fine,” declares GK.

“Well you pious buffoonl! You always did waste a lot of words to say very little,” said an indignant Sam to GK.

“Perhaps the subject I was writing about was deeper than you could entertain,” declared GK back.

I have to stop writing and break them up before there is a fistfight in my living room.

And right here, at this moment, I have two of the world’s greatest writers entertaining me in the most remarkable way, all without having organized a single thought.

And the whole time CLL never crossed my mind. Or perhaps, it mostly didn’t cross my mind.

“Come on Sam and GK,” I said, “Let’s go out a smoke a cigar.”

“I don’t smoke,” said GK.

“I do,” Sam said, reaching into my humidor and rejecting several before he found the Cohiba I had hidden near the bottom, pulling it out with a smile on his face.

“Perhaps we should call up Kipling,” Sam suggested. “He likes a good cigar.”

GK said nothing, just looked up towards heaven, then disappearing in a puff of smoke as Sam lights the Cohiba inside the house.

“Debbie will get us both,” I say, heading for the door with Sam in tow.

CLL? I’ll organize some thoughts about it later. If I spend the time organizing them, I doubt I’ll have the energy left to write about them.

A full and complete refund is available to all of you who have been disappointed here.

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4 thoughts on “10/13/16 Organizing Thoughts”

Entertaining is in your mindset Chris! The only thing I view with disappointment is the ruxolitinib is not working as well as it once did. On the other hand, I can visualize all those writers sitting around in your house making commentary and argument about your style….that was an entertaining diversion!

If I don’t entertain, no one will stay long or come back. I reckon if I entertain myself, others will be entertained, too. I might wrongly reckon, but I mostly reckon not. I reckon I will now reconnoiter in consideration of my next magnificent post.